Epilepsy facts, figures and terminology

Some facts about epilepsy

• Epilepsy is the tendency to have recurrent seizures.
• There are around 40 different types of seizure and a person may have more than one type.
• Epilepsy can affect anyone, at any age and from any walk of life.
• 456,000 or one in every 131 people in the UK has epilepsy.
• Epilepsy is a neurological condition.
• Only 52 per cent of people with epilepsy in the UK are seizure-free. It is estimated that 70 per cent could be seizure free with the right treatment.
• One in 20 people will have a single seizure at some time in their life.
• Many people who develop epilepsy below the age of 20 will ‘grow out of it' in adult life.
• Many people with epilepsy are still discriminated against due to ignorance about the condition.
• Epilepsy is covered by the Disability Discrimination Act.
• The vast majority of people with epilepsy can take part in the same activities as everyone else, with the help of simple safety measures where appropriate.
• People who have been seizure free for a year can re-apply for their driving licence.

Terminology to avoid

• Illness: epilepsy is a condition, not an illness.
• Fit: the term ‘seizure' or ‘epileptic seizure' is preferred as people with epilepsy do not always experience convulsions.
• An epileptic: it is important to look at the person before the medical condition, therefore it is more appropriate to say ‘a person with epilepsy'.
• A victim, sufferer (this depicts someone helpless).
• Grand Mal or Petit Mal: terms previously used to describe types of seizure. There are many types of seizures so these terms are too general and are now considered outdated.

We are often asked about the word 'brainstorming' and whether its use is acceptable. Our view is that it depends upon the context: if the word is being used to describe a meeting where participants are suggesting ideas, then its use is not offensive to people with epilepsy. However, it should not be used to describe a seizure or the electrical activity within the brain during a seizure.

Basic first aid for seizures

Do

• Protect the person from injury - (remove harmful objects from nearby)
• Cushion their head
• Look for an epilepsy identity card or identity jewellery
• Aid breathing by gently placing them in the recovery position once the seizure has finished.

• Be calmly reassuring
• Stay with the person until recovery is complete

• Restrain the person
• Put anything in the person’s mouth
• Try to move the person unless they are in danger
• Give the person anything to eat or drink until they are fully recovered
• Attempt to bring them round

Call an ambulance if…

• You know it is the person’s first seizure
• The seizure continues for more than five minutes
• One tonic-clonic seizure follows another without the person regaining consciousness between seizures
• The person is injured during the seizure
• You believe the person needs urgent medical attention

Some facts about Epilepsy Action

• A charitable and independent organisation founded in 1950 to improve the lives of people with epilepsy in the community.
• The largest member-led epilepsy organisation in the UK.
• Directly helped over 731,000 people last year.
• This website receives approximately 135,000 visits every month.
• Epilepsy Helpline - freephone 0808 800 5050 or helpline@epilepsy.org.uk - provides confidential advice and information to members of the public and professionals on many aspects of epilepsy.
• A new online live advice and information service can be accessed through our website.
• National network of around 100 self-help branches in England, Wales and Northern Ireland, to provide local support.
• Dedicated accredited volunteers throughout England, Wales and Northern Ireland.
• Offers a range of literature, videos, DVDs and a CDs covering all aspects of epilepsy. Leaflets available in Bengali, Cantonese, Gujarati, Hindi, Kurdish, Punjabi, Somali, Urdu, French and Turkish. Other languages are planned.
• Membership - To enjoy regular magazines and updates, access to our online memberzone and free personal accident insurance, join Epilepsy Action as a member from only £17 a year for standard membership (there is a reduced rate of £11 for people claiming benefits, receiving a pension or in full time education) and £40 a year for professional membership. Call, email or join online now.
  
• Publishes two membership magazines: Epilepsy Today and Epilepsy Professional
• Publishes a membership magazine: Epilepsy Today.
• Initiated and administers the Sapphire Nurse Scheme which since 1995 has funded 81 epilepsy specialist nurses across the UK.
• Undertakes a wide range of conferences and educational activities each year.

• What does Epilepsy Action do?

Notes to Journalists

For journalists' enquiries only, please contact Epilepsy Action's press office:

• Phone: +44 (0)113 210 8800
• Fax: +44 (0)113 391 0300
• Email: press@epilepsy.org.uk

For general enquiries from members of the public, please either use our Epilepsy Helpline freephone 0808 800 5050 or helpline@epilepsy.org.uk.

You may also want to see the guide 'Hacked Off: A Journalist's Guide To Disability', produced by Disability Now and the National Union of Journalists.

• Download the information on this page

March 2008

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Epilepsy facts, figures and terminology